When we were young my sisters and I spent many happy hours playing with a Hornby clockwork trainset which my father had collected in the 1920s. It had a gauge of about two inches, three shiny locomotives, and enough tracks and rolling stock to populate three bedrooms and a hallway. So I wasn’t surprised when my son preferred Thomas the Tank Engine and friends to human company, and the soothing voice of Ringo Starr narrating simple train adventures calmed him more than human touch. By then the Hornby set must have had gone to railway heaven. I went to school by train and latter flatted near the railway yards where the sound of shunting never stoppped. My son now goes to work by train, on a route now saved after many attempts at closure. Some of the guards have also grown up living and breathing trains and memorising timetables, and impart this love to the job.

So when I heard the announcement on the morning of Tuesday 1 July, that there was to be a ceremony down at Wellington Railway Station to celebrate the buy-back of the rail network, I went along on behalf those train buffs who couldn’t be there. For those who don’t know it the historic Wellington Railway station is a busy public place incorporating a supermarket, a university campus and a platform 9 and 3/4. It is a lucrative place for Autism NZ fundraising days.

It was a sunny winter morning at the regular Platform 9 and a little stage had been put in place next to a railway locomotive that had its new colours covered up by a curtain. A large group of railway workers, railway enthusiasts and other members of the public like me waited for the official function to start. Television and radio reporters, journalists and photographers, jostled to get the best positions. I recognised several faces from our daily TV news programmes. Then Prime Minister, Helen Clark, Deputy Prime Minister, Michael Cullen, and Minister of Transport, Annette King arrived. Several other Members of Parliament were there too, some from other parties. Michael Cullen and Helen Clark gave short speeches, announcing that the new service would be called Kiwirail and that former Prime Minister Jim Bolger would chair its board. Then the Prime Minister pulled the ribbon of the curtain revealing the shiny new silver and dark orange (‘persimmon’ suggested Dr Cullen) Kiwirail colours with the fern logo that looks like a stylised railway track.

The group then moved into the main foyer of the railway station and the journalists crowded around the PM and Deputy for more details. Invited guests, railway station staff and shopkeepers, passing passengers, and interested members of the public like me, were invited to have cups of tea and sandwiches (more delicate than the traditional railway ones). Banners advertised the 100 year celebrations of the main trunk line in August and other railway scenes. Then Jim Bolger spoke about his new role and hopes for building a strong new integrated railway and transport network.

I think it is remarkable that in New Zealand that we can still have events like this in public places open to any interested members of the public who can then mingle with our political leaders. Like our train services, long may it continue.

The railways have had a vital role in the development of New Zealand. Neill Atkinson’s  Trainland: how railways made New Zealand (Random House, 2007) is a well illustrated social history. With the railways grew towns, trade and infrastructure. In August a special train trip will mark the centennial of the completion of the main trunk line. The commemorative train will include a lovingly restored original carriage.

The greater Wellington region was planned along the railway.Auckland suburban towns were also planned to be linked by railway but a change of government saw reserved land sold off and roads built instead. The railways feature in our culture and history – Janet Frame and Robin Hyde are two writers whose works significantly mention rail. Many family incomes over many decades depended on the railways. But for the last couple of decades rail has been run down.  In the early 90s the network was sold off and asset stripped. Most of the magnificent locomotives went overseas. Picturesque lines remaining such as the Transalpine or Taeri Gorge lines survive as private operations for the tourist trade. But regular passenger routes to such destinations as Gisborne and Invercargill have gone and the Auckland to

But now railways’  time is coming again. Double tracking, electrification and new lines are possible. Railway workshops may be re-opened providing dream jobs for many. Later in July came the news that money was going into building up the suburban services in Auckland and Wellington. A train recently brought rugby fans to Carisbrooke. (The success of the Wellington stadium in the Wellington railway yards proves the value of integrated services.) I hope to see a regular Invercargill to Dunedin and other passenger routes back soon. Now all we need in our main cities is light rail to their airports so trainspotters and planespotters will all be happy.

For those who don’t know me, I’m Matt Frost. I work as Policy and Information Researcher at CCS Disability Action National Office in Wellington. I am also proud to say I am an Aspie!

Last month, I was privileged to be able to attend ceremonies at the United Nations in New York. This is somewhere I have always wanted to go as I’ve always been interested in international affairs. I accompanied my friend and colleague, Mike Gourley who is President of the New Zealand Disabled Persons Assembly, as Mike’s support person. This was great as we showed that two disabled people could be a strong support for each other- something commented on very favourably in New York.  

The Franklin Delano Roosevelt prize ceremony was incredibly special for me as a New Zealander. His Excellency the Governor- General, accompanied by Her Excellency and his party, accepted the award on behalf of New Zealand. This prize was awarded to New Zealand as the country which has made noteworthy progress towards the goals of the United Nations Convention on the Rights of Persons with Disabilities. Ban Ki-Moon, the UN Secretary- General was also present. It made me aware as someone with an impairment that we have made a lot of progress and are respected internationally, but that we as a country have a strong reputation to live up to and that we need our future actions to reflect this. It was also really special to attend the Entry into Force of the UN Convention- a policy document which will improve the lives of people with disabilities (including ASD) worldwide.  

In summary, I was immensely proud to represent our country and disabled people in this way. New Zealanders I feel should realise what achievements the awarding of the prize and the Convention actually are. The prize recognises that we as a country (and the advocacy of disabled people in New Zealand) had a powerful role in obtaining world recognition of the concerns of disabled people worldwide. We should celebrate that- but also commit to continuing progress towards a society that fully includes all disabled people- including people with ASD- and their families/whanau. Matt Frost
Policy & Information Researcher
CCS Disability Action DDI    04 801 0861
MOB  027 309 3706
EML   matt.frost@ccsdisabilityaction.org.nz http://www.ccsdisabilityaction.org.nz/  

At the launch five speakers with lived experience of autism talked briefly about the significance of the Guideline. Three were people on the spectrum and two were parents. Among the speakers was Jen Birch who is an adult with autism who has been involved with the Guideline development for several years and is the author of Congratulations! It’s Aspergers Syndrome, and Matt Frost who is a young adult with autism who will convene the ASD Guideline Implementation Advisory Group.

The full Guideline and a Summary are available from the Ministry of Health http://www.moh.govt.nz/moh.nsf/indexmh/nz-asd-guideline-apr08

The next step is the hard job of implementing the Guideline so the services and supports it recommends are available to people on the spectrum and their families throughout New Zealand.

The New Zealand Guidelines Group (http://www.nzgg.org.nz) has the contract for the implementation of the Guideline and will work alongside the Ministries of Health and Education which have led the work so far. An Implementation Advisory Group of representative people from the sector is being set up to decide on priorities, identify gaps, develop various workstreams, and generally oversee the implementation of the Guideline. There will be ongoing opportunities for input from interested people.

…………………………………………..

The following is my speech from the Guideline launch: 

“I am one of the lucky parents in the autism community. I had a supportive family. No one took my child off me and placed him in an institution and told me to forget about him. No one told me that he couldn’t attend their school, no one asked me to pay for a teacher aide, and neither was he asked to leave school because they didn’t understand autism.  No one said his behaviour was too difficult for respite care. No one said he was too disabled for a job, for independent living, to be treated as a human being with feelings, hopes and dreams. No one said it was my fault.

 Many parents have fought and continue to fight for their autistic children to be supported to live ordinary lives like other New Zealanders. Often the mother copes alone – and her whole life involves managing the complex care requirements of her child - the erratic access to education, the turnover of care workers, keeping the family together and the negotiations required to keep all the balls in the air. 

In contrast my experience was of a friendly Plunket nurse who arranged for my son to attend a local 3 year check one day in 1988. In that same hall was a speech language therapist, an educational psychologist and early intervention specialists. Within two weeks there was a plan around my son where specialist teachers came regularly to playcentre and home, and he also had weekly speech therapy. All free, all part of an integrated system. At school he continued daily on-site speech therapy.

Note: this was before the big fragmentation of the 1990s.

I did not regard this as lucky – this integrated approach just seemed sensible and instinctively felt right. It is ironic, and a sad commentary on the world in which we live, that it has taken 20 years and best practice evidence from around the world, and over 300 recommendations, to attempt to build a collaborative system that just instinctively feels right. But this time it is going to be better, more effective and more equitable. This is a whole of life, whole of spectrum, whole of government approach.

But we will not get there without a supportive and skilled workforce. Autism is also the focus of my academic research and I have dug into the 10 year history of the guideline development. Again and again there are the names of the quiet champions of the public service who have kept on calling the meetings, getting the funding, seeking out research, keeping the enthusiasm going.

And thanks to the parents for all their blood sweat and tears for their struggles to ensure our children live and interact and are educated with their families and friends and peers. And to the wonderful children (like my son who has put up with talking about him all these years). And thanks also to Minister Ruth Dyson for her ongoing support.

Now we have to get on with the job.

Being diagnosed with Aspergers and many associated conditions, has helped explain why I always found courses, meetings and social events quite dramatic, and change almost impossible to deal with. I ended up being the one every one remembered for all the wrong reasons It is a known fact that Asperger people find change hard, and will stick to very stressful jobs, even when very stressed and not happy.

I had huge problems when it came to being interviewed, I just I fell apart. So it was such a relief when one of my ex. bosses after viewing my web site recently wrote:
“I felt really sad when I read the bit about your work experience and especially about interviews. I remember the interview you did that I sat in on and was really puzzled about how you came across - as you say you knew you could do the job, we knew you could do it but it wasn’t coming out at the interview. Now I have been reading what you have to say about AS I think I can begin to understand.”

I think one of the hardest parts for me, Is knowing I am very intelligent, I have a wonderful gift for being able to see the overall picture of things, and that’s why doing things like setting up a web site on my own is quite easy. It can be so hard not having a education and until recently I have not had the confidence to be myself. I have had to spend a life time of proving to others I am capable.

Meeting new people is one of the things I find extremely hard. I do not do small talk and of course what is it most people first say “what do you do”, “where was you educated”.. how do I begin to do that when parts of me and my life I never understood until now.– How do you tell others who you are, when inside feel like your lost in the ocean drafting. 

I now feel like at last I have been saved, but would not wish my journey on anyone, it’s been far too hard and painful at times. No one really seemed to understand, believe in or has been willing to let me simply be me. Growing up and not knowing is a bit like being wrongly imprisoned. You live / act for this world, but play / have fun in your own. 

But at times of course, your world spills over and intrudes into their world, that’s when your so called friends drift away…

Of course over the years I have learnt to change, adapt and gain confidence with age. Unfortunately since being diagnosed have also found quite often that what others do not understand, they prefer to keep at arm’s length.

We all need to learn to understand that in fact our symptoms whatever they are, are a part of who we are and lead a balanced life that allows for these differences. Of course it’s not that simply as we still are all so different and can have different associated conditions and circumstances. If you know one person on the autism spectrum disorder, you just know one! We are unique individuals and share traits which has been behind some of the greatest human achievements to date.


I was speaking to someone on line and they said something along the lines: 

I’ve found Cambridge University to be quite conducive to the generally unique learning style and style of interaction that many with Aspergers have. In particular has been tolerance for limited face to face exchange, and patience put forth into allowing time for those with Aspergers to generate their thoughts and finish expressing them….      

My reply: “Not everyone is able to go to Cambridge University, and not sure it would have suited me. What may suit one Aspie (person on the Autism spectrum) may not suit another, as we are all very different, the way I spoke when younger was very fast and muddled with a east end accent, and feel would never of fitted or felt at home in at Cambridge University… 

“My cousin when to Oxford University a genius really, but since leaving moved into his own home and stays there alone, does work but not as we all know it and would be very hard for him now to integrate like the rest of us.”I do understand what you are saying, but we all do have to learn to live in the real world.”
But after saying that, it got me thinking - what is the real world to one, is not for someone else and why cannot people exclude themselves if makes them happy. Do we have to act in the real world and be happy in our own or will society ever accept us for who we are!?

I still do not know all the answers myself, that’s why I am trying to open discussion to get people thinking about our differences .As unfortunately people still think Aspergers is an illness, in fact someone said to me recently” I know what it is, it’s a mental illness” my reply to this was I am really not mentally ill, just different.

The easiest way I can explain this: People on the autism spectrum think one way and people not on the autism spectrum think another way and we both continue to cross wires. People would never know if I did not tell them I had Aspergers, it does not mean I do not suffer and often feel at odds with the world.

Just spend one day doing some think that you find really hard and glad when over, well that’s what it can be like for a lot of people on the spectrum a lot of the time. Just to chat to people and to smile and be friendly can at times be a task for some of us.
I feel I have come a long way, but know other people on the spectrum still are so wrongly judged. We really are just unique individuals which the so-called ‘normal’ world often underestimate, and often do not try to understand. We have been made to believe in a stereotype of ‘normality’ for our children, and to panic, fear and react when our offspring don’t achieve. I was speaking to a little boy at school some time ago and when I ask him why he was misbehaving so much, he simply said “I’m bored” these children often are very needy and find it hard to focus on things that do not interest them, is it really the child’s thought he is bored, or is he just not being heard!I have had dark moments, which have lead to depression and my obsessive tendencies have taken hold, I have felt like withdrawing from society. But with new understanding comes hope and I no longer am crushed at every turn and truly love being able to be the real me. In the past at times it has felt like my very being has been smashed open with a sledge hammer, but now I am no longer lost and chaos no longer shadows me. I have found my true self.

Do not crush your child, embrace them and their differences, allow them to believe in and be themselves. We really are real people and can lead successful life’s, you may not always agree with our differences, but at least try and understand.

There still are so many variables and differences and far too many labels, for even those on the autism spectrum it can seem like one incomplete puzzle at times.

Being on the spectrum, and having Autism, Autistic Spectrum Disorder, Aspergers, High functioning, Low functioning and disorders that run parallel with the spectrum disorders and are treated the same but not on the spectrum like non verbal learning disorder – confused, to me they are all part and parcel of the same spectrum and I feel there should be one name.

Autism is like a web which is in the center and around it just some of the associated conditions people can have PDD, OCD, Social phobia, Anxiety, Bipolar, ADHD, ADD, Dyslexia, Dyscalculia, Dyspraxia, Tourettes Syndrome, speech disorders… It seems to depend on who you see, is what you get diagnosed with. There really needs to be a one stop place, for advice on not just autism spectrum disorders, but all the associated conditions as well. Trying to be diagnosed can be near impossible especially for adults; the whole system at present is far too disjointed.

I saw a program on Dyslexia and it hit me like a ton of bricks, how could I have and not of know until in my 40s. After I got diagnosed for Dyslexia, also found out had Dyspraxia. But still knew there was some think else, so continued to search and write down all my differences, armed with all this information approach my doctor and I was lucky he thought I may have Aspergers. Was told just like that, after all these years and referred onto a Clinical Psychologist.

I have been diagnosed with Aspergers, Dyslexia and Dyspraxia (which have found out is the cause for my driving problems), Bipolar traits, but that’s ok under control now! and have sight problems. Undiagnosed but very sure have ADHD or ADD, always been extremely hyper, and as a child had Clutters, a speech disorder.I did ask Tony Attwood on his views regarding Mood swings (Bipolar) link to aspergers, and his response was:

Thank you for your message and very intriguing question. I think that people with Asperger’s syndrome have many issues in relation to emotion regulation and perception which comes from my clinical experience. However, new research on the amygdala (a part of the brain that is involved with emotion regulation and perception) has indicated that those with Asperger’s syndrome can have difficulty managing their emotions. I am not sure if the characteristic is one of bipolar or manic. I prefer to describe it as an intense emotional response that is difficult for the person with Asperger’s syndrome and others to control. A person with Asperger’s syndrome may very quickly move into an intense emotion with a relatively minor trigger.I recommend Cognitive Behaviour Therapy (CBT) for people with Asperger’s syndrome to help them use their intellect to manage their emotions. I have a whole chapter on this in my new book The Complete Guide to Asperger’s Syndrome, published by Jessica Kingsley Publishers, with more info. at www.jkp.com. Tony Attwood.        

As a parent I have often been made to feel bad for my children’s differences, let alone my own. To me it does not matter if my boys are on the spectrum or not, the most important thing is that they understand who they are. I will never make them conform, but do want them to be confidence and believe in themselves Maybe this is because I recognized bits of me in them, and do not want them to suffer my childhood chaos.
As a parent you know your children best, so try not to allow others to tell you they know better than you, as more than often they do not. Celebrate your child’s quirks, eccentricities. As just like our children we do not always need to conform, believe in them and yourself. What is really needed is for society to accept that there is in fact a whole group of people who are just different and it’s ok.

In other cultures, some of us allow for differences and except individuals for the way they are, why can’t the rest of you. All I ask people to do is take a step back from time to time, and enjoy your child’s individuality. But, as long as we continue to prejudge others, and not recognize peoples invisible disorders, you may be hurting someone more than you could ever imagine.
I continue to hear “but I did do disability training” but that only gives you a very basic idea and as yet does not usually cover invisible disorders, such as autism. And others have done courses on ASD, but a course only does help you understand. You cannot become an expert overnight, and please remember we are all unique individuals, so treat us as such.

I have lived with and around ASD all my life, I have intently studied since realizing I could have, this was before I was diagnosed and I am still learning. No one knows all the answers yet, that’s why it’s so important we all come together and learn from each other. Far too many people are being left in the dark, needing help and not knowing which way to turn. Unfortunately it’s still a bit like breaking open a piñata and depending on which direct you go, is what you get diagnosed with and what help you receive!

Do adults need to be diagnosed – my answer would be a big yes, if it was not so hard and cost so much, and if a doctor does not tell you “adult do not get diagnosed” false of course. Unfortunately at present it can seem like trying to fit together a puzzle with all the wrong bits. But I cannot express how much of a difference it has made to me, set me free of all the anger, frustrations and confusion.
My boys keep things in perspective for me, otherwise at times it can feel like I’m in the middle of a very big ocean and no one can hear me, battling against impossible odds.. But as the Aspie community grows stronger there seems to be a brighter future for our children and that makes it more than worthwhile. Now at least I understand enough to be the real me and talking about my past is no longer a dark shadow. So for now I guess I am happy being uniquely artist autistic and will continue to convince others that it really is ok…


Autism spectrum disorder it’s not a dirty word that we should only mention behind closed doors, we all need to embrace, talk about and learn from each other if not for this generation, but the next.
The government has already agreed to go ahead with screening children at a younger age, which I feel is brilliant and truly needed. But my concerns are if people already with disadvantaged learning disorders do not have nowhere near enough support , backing or even understanding now. How will the government deal with a growing number of early diagnoses? If I was in a wheelchair would you still discriminate against me the way you do now!?
. 

ASPERGERS PARALLEL PLANET:http://www.asplanet.info/ 

Article Link: http://asplanet.info/index.php?option=com_content&task=view&id=79&Itemid=125

Last Friday was a great day. An hour before we set off for the Big Day Out, the mail arrived. It contained our older boy’s first set of NCEA results. He achieved every Level 1 standard he sat, and picked up a couple of merits along the way.

For an Asperger Syndrome child we once thought would need sheltering all his life, it was a brilliant result. We went into the lounge and showed him. He was pleased and proud, as you could see from the photographs we took of him with his certificate. His teachers say his peers have learned to not only recognise, but to value his difference. He is, literally, an original thinker. Here’s to another year.

Yesterday was not a great day. A woman from Correspondence School rang regarding his younger brother, also Asperger but a very different person, who has been out of mainstream school for more than a year. He didn’t get a report last year — he didn’t return enough work.

Through the generosity of friends, we had been able to take on a tutor, a kind and hugely experienced former school principal. We quickly realised that our original plans had been too ambitious. Our son is very bright — he reads and spells better than many adults, is articulate, and seems to grasp computer programming well  – but he has some significant deficits. When he felt overloaded, or encountered work he couldn’t immediately grasp, his anxiety would rocket and things would go haywire.

We cut back the length of lessons and, through experience, discovered that going to the tutor’s house worked better than having him come to ours. Parents of AS children may recognise the anxiety generated when an extra body suddenly enters the home. The tutor wanted to focus more on simply working together, rather than setting our sights by the Correspondence School curriculum, and there was some merit in that. But eventually he decided that our son needed more than he could give, and we reluctantly let him go.

But we had been in touch this year to negotiate a slimmed-down, and more realistic, programme for him and were preparing to make a another go at it.

Not any more. The news from the school was that our Group Special Education case worker had withdrawn approval for our son to continue with Correspondence School, because not enough work had been returned. The school couldn’t do anything about it.

Incredibly, this was our first notice of the decision. Two weeks before school goes back, our case worker had not even done us the courtesy of telling us herself. This wasn’t entirely out of character. In theory, she was supposed to see us frequently throughout the year. She came twice in all of 2007.

I’d be lying if I said that was a problem. I never felt our case worker had a good understanding of autism spectrum conditions, and her advice was often inappropriate. Over time it had invariably consisted of “send the child to school, no matter what”. Given what we, and his last school, went through, this wasn’t an option (she also pressed us for some time to send him to a residential facility, which, a specialist agreed with us, was a reckless idea). Last year, she did not approve our original attempt to undertake a reduced curriculum with Correspondence School. She told us this was not possible.

I would have to bite my lip when she came. She often gave us the impression that our problems were our own fault. Once, she offered unsolicited advice about the older boy, with whom she had no formal involvement. We should look at steering him into a job parking trolleys at the garden centre, she said. Yes, she was talking about the boy who just passed all his NCEA standards.

We may make a complaint, but I’m not interested in dealing with this woman again, ever.

So now we have to work out what to do, again. I’ve been exploring one option, but that requires a school registration. We tried with our local secondary school, the one that’s done so well for our older boy, but they’re wedded to their mainstreaming and wouldn’t countenance a school day that included time out of full-size classes, which are a sensory and emotional problem for our boy.

Again, we feel anxious and guilty. Like others in our position, we ask ourselves whether we’re doing enough. We agreed to medication (a low-dose SSRI), which was a difficult but correct decision. We’ve embarked on an RDI programme, which is promising (the specialist psychologist we see as part of this was astonished by the case worker’s urging to send our son back into classrooms) but a long, demanding game.

And again we feel like there is nothing for us, and no competent help from the system. Every New Zealand child has the right to an education. But, as we have discovered, again, there are exceptions.

There are lessons here for autism services too. Autism and child cancer services have more in common than might appear. Both require teams of highly skilled professionals. Both conditions have grown in profile over the last few decades. As recently as the 1970s child cancer was mainly treated palliatively while at that time autism was thought to affect only about 1 in 3000 people and institutionalisation was still an option. Access to education or support was problematic.

But now both child cancer and autism are increasingly common and New Zealand parents have expectations of intensive state funded intervention, partnership with providers and professionals, and participation for their children in schools and other settings. (Not to mention that children with autism are developing cancer and some cancer treatments - such as for brain tumours - may leave the child with autism like conditions). NGOs such as the Child Cancer Foundation and CanTeen have a visibility and status that autism NGOs can as yet only envy.

Autism support, like child cancer interventions, involves having a workforce of well trained paediatricians, speech therapists, psychologists, social workers, teachers and many others. So to keep the workforce sustainable there must be ongoing planning, professional development and support, union overage and good remuneration. In the early 1990s training and career development for speech therapists was cut. Once this policy was turned around after 2000 it still took several years to train a new workforce of speech therapists – people who play a vital part in autism support.  As consumers we have a role here.

While my younger child has led me through the autism maze, I learned about child cancer after my daughter was diagnosed with leukaemia just before her 6th birthday. At that time my then undiagnosed autistic son was a toddler who spent much of his time running away shrieking loudly along hospital corridors - the embodiment of what the rest of us would have like to do.

In the late 1980s my young daughter was admitted to the old Ward 18 of Wellington Hospital for cancer treatment, so I have a personal interest in this issue. The ward was shabby and a relic of the era when parents had no place in their child’s hospital care. There was no Ronald McDonald house and accommodation for parents was limited. The Child Cancer Foundation did not have a local presence. There were no play therapists and non family members – even those who offered to read to or entertain children - were discouraged. There was no cognitive testing to monitor the effects of treatment or late effects clinics. Although Camp Quality had recently started there was little understanding of the needs of siblings. The best you could hope for was your child’s survival.

Then, as now, children came for treatment from a wide geographical region of New Zealand and from a variety of socio-economic and cultural backgrounds. Compared to today treatment was pretty primitive and cure rates not terrific. Several children died in our first few months there. But after a couple of years my daughter’s treatment finished and a new children’s hospital was built. Then there was a crisis as the oncologists left. The Child Cancer Foundation and parents combined to fight for the service. Gradually specialists were lured to Wellington (although the turnover remained high) and the service struggled on. But Hamilton and Dunedin lost their treatment centres.

A farsighted approach would have been to sponsor some promising junior doctors to train overseas as paediatric oncologists and possibly bond them to Wellington for a time. This idea was raised by parents but was out of line with the free market 90s.

For these were the days when the market dominated in health; there did not appear to be any workforce planning, there were no elected representatives on hospital boards, and little cooperation between the competing health providers. For a time there were even lines on the floor of the hospital to direct the client (as if there was a choice of treatment options!) to the outpatient visit payment office.

So fast forward to 2007 and what has happened? There is a nationwide Cancer Control Strategy. Centralised workforce planning has led to increased capacity in areas such as radiation therapy. Nurses have won a multi employer collective agreement and significant pay increases. Capital Coast Health DHB now has a majority of elected members and they have voted to ensure Wellington child cancer services remain in an innovative collaboration with Canterbury DHB. Meanwhile diagnosis rates rise as do the expectations of long term survival.

But finding paediatric oncologists is only part of the story. They also need to stay. Staff turnover in the whole paediatric oncology area is high as this is stressful medicine. The treatment regime is tough for patients, parents, and professionals who have to force toxic chemicals, pain and suffering on small children.

And sometimes children die. This is a dilemma for health professionals as hospitals are geared to interventions and treatment– not peaceful palliative care – and there is no local palliative facility for children. A child’s dying is sad but also very powerful – invariably these children are wise, knowing and accepting and can teach us a lot about compassion and generosity of spirit. Death is part of life. The experience of childhood cancer is not necessarily something to regret. It may be a chance to re-evaluate and prioritise your life. It has given me a strong belief in children as complete human beings whatever their age, worthy of rights, dignity and respect. They are not the possessions of their parents.

You also see the nice side of humanity. I still appreciate the kindnesses of others 20 years ago. When my daughter couldn’t stop vomiting in the carpark someone nearby handed us a towel. I will always be grateful to the friends who organised a food roster and support. And so grateful to everyone who helped ensure that she survived.

But having a child in hospital will exacerbate any existing tensions so families often go into basic survival mode. Family problems, money, employment, religious, relationship and even custody battles may be fought out over the child’s bed. The hassle of finding a park might be enough to tip an exhausted parent over the edge. I recall how mothers either dramatically put on or lost weight from the stress. Guilt and worry about the rest of the family is great. The nurses or other front line staff will often be the targets.

To survive in a caring profession you have to be cared for. Health professionals understand about tight resourcing in a free public health system. But the little things that make the difference often don’t cost much money: the mentoring; the professional supervision; the acknowledgement of a hard job well done; the back up support; the opportunities for professional collaboration. Hospital staff are not heroes or villains – they are ordinary people trying to do a job. We owe it to them to future proof their professions whether they are nurses, doctors, specialists, radiotherapists, dieticians, physiotherapists, administrative, NGO or other staff. And let’s not forget the expertise of the volunteers and the parents. Hospitals are organic, and to be healthy those inside need to be nurtured.

It is a similar story with all the people who work with our autistic children. Not forgetting those who support adults on the spectrum.  Speech therapists, psychologists, social workers and teachers require education, career pathways, professional support and good remuneration.

You could think of both conditions diagrammatically as a series of concentric circles with the child in the centre circle, surrounded by circles of parents, family, support services, health and medical professionals. In my experience parents often feel alone and isolated but problems are often due to lack of communication and relationship development between circles.

Especially at this time of year, I would like to acknowledge all those health, education and other professionals who work with our children. It is great that people choose careers that are about supporting the wellbeing, health, education and humanity of others. As a parent I appreciate what they do, from the paediatricians to the street level bureaucrats, the teacher aides to the contract managers, the volunteers to the cabinet ministers. And all the taxpayers who fund it.

But Governments through their health and education services, need to continually plan ahead to ensure the professional expertise needed for both conditions is available, and then to adequately support and remunerate those professionals working in the field. We must sustain and grow the workforce and consumer lobbying is one way to do it.

No parent knows what is around the corner for their child. For those children who will need cancer treatment or autism support let’s work together, plan together, and share perspectives to ensure the workforce and the services will be there when needed. It is up to us as consumers to be continually vigilant and active.

Hilary Stace
 

Now, his mother, Shell Moxham-Whyte, has confirmed to the Herald that Owen is Asperger. My thoughts are with her and the family, not least because we have an Asperger teenager with an affinity for computers and an inability to cope with school in our house too. He’s five years younger than Owen, and demonstrates a peculiar combination of intellect and unworldliness.

(We were reminded recently of his deficits when he set out recently for a friend’s place and got lost on a simple route. I was inclined to let him go, even though his cellphone battery was dead, because it was such a welcome and unusual initiative on his part. He turned up an hour later wondering what all the fuss was abut.)

I’ve dealt with “script kiddies” before, as an IT journalist, and more than once I’ve detected an inability to fully perceive the impact of their actions. I suspect that will be the case here.

Let’s not be under any illusions: botnets are bad. They are networks of PCs compromised via a virus or Trojan software so that they can be invoked and remotely controlled by one or more “bot herders”. Typically, they can be marshalled to send spam, visit websites en masse (to commit “click fraud” by scamming the Google Ads system with millions of fake visits) or, most often, to conduct distributed denial of service (DDOS) attacks, which involve bombarding and crippling target servers with malformed requests for data.

It seems that it is the last of those we’re looking at here. Statements from the FBI have been confusing and somewhat lurid, but it appears that Owen hasn’t personally profited, and that the $20 million figure making headlines around the world is an estimate of the “economic loss” caused by attacks, including one on a server at the University of Pennsylvania.

These estimates should be taken with a grain of salt. They’re usually compiled by counting the use of computer security resources that would exist in any case, by agencies that want to look like they’re fighting the good fight.

But it would be wise to consider that the other young man indicted in the case, 21 year-old Ryan Goldstein, is still attending the University of Pennsylvania, where a spokesman has described damage arising from his actions as inconvenient but not irreparable.

If, as “AKill” (a nom de guerre taken from the “automatic kill” command used to knock unwanted participants off IRC chat channels), Owen really has created a Trojan that can wriggle past current anti-virus and firewall software, that suggests he’s very talented. It doesn’t make him an evil mastermind.

He has a whole world of trouble coming down on him now. But it might be useful if the people who have to deal with him could remember that he’s not just a lawbreaker. He’s also a kid who got lost on a straightforward journey.

As with previous years, the conference papers are supplemented by lively public forums in which anyone can ask questions of the authors, share opinions and wrestle with the diverse thoughts of others.

In contrast to some events documenting the progress of autism research, this conference makes great efforts to fully include the viewpoints from autistic people themselves. It is also heartening to witness the openness with which some researchers allow their theories to be vigorously challenged by well-informed members of the public. Debates about autism can get mighty firey at times, especially around topics of causation and also the seemingly contradictory positives and negatives of being assigned a place on the spectrum (or finding one’s children situated there).

The host of the conference is Autism Cymru, an autism charity organisation based in Wales. Due to the large numbers of people attending past conferences, it has been necessary this year for the organisers to charge the small fee of 3 pounds. But well worth it in my opinion.

You can drop in now to the AWARES conference centre to view the abstracts and also register if you so decide.

Dr Abraham’s motivation for this research is to encourage ‘health professionals to consider a diagnosis of autism, rather than suggest purely a mood, psychotic, or personality disorder, in patients presenting with signs similar to Janet Frame’ A correct diagnosis should help them get appropriate support to participate in the community, not be separated from it. She decided on HFA rather than Asperger Syndrome (AS) because of Janet’s own indication that she had early language delay (the only real difference between HFA and AS).However, Janet Frame’s niece who has an adult child with classic autism, has taken exception to this suggestion. She says Sarah is wrong to make such a claim.

This controversy illustrates that the autistic spectrum is wide, growing and hard to define. It shows both the current fascination with autism and the high esteem in which Janet Frame is held. But it also reinforces my own theory of Janet Frame. In the year 2000 I wrote an essay (since lost) as part of my study for a Master of New Zealand Studies about whether Janet Frame had Asperger Syndrome rather than the schizophrenia she was misdiagnosed with in the 1940s. At the time, the fascinating and detailed authorised biography by Michael King had just been published, I had a newly diagnosed teenage son, and I had long been an admirer of the unique and creative way Janet Frame used the written word. For sources, as well as her autobiographical and fictional writings (a distinction often blurred by Janet), the Turnbull Library had an exhibition of her work containing video and audio sources.I discussed the AS theory with Michael King who indicated agreement but advised me not to publicise it at that time. At the Autism NZ conference that year I mentioned it to Tony Attwood. He said many people previously misdiagnosed with schizophrena were actually autistic. But now Janet and Michael are both dead so we cannot get their reaction to this current controversy.

I forget all the indicators of AS I found in the biography and writings but here are a few. As a child she wanted people to keep still while she told stories as she was distracted by movement (indicating the typical AS monochanelling). She was always regarded as ‘different’ and approached her academic and other work in original and unusual ways, and lived much of the time in her own world. She had a very good visual and auditory memory, was very sensitive to light and sound and describes an intense catatonic aural/visual sensory experience by the Clutha River. She tried in vain to soundproof her houses. She was very literal and when asked by a psychiatrist whether she heard voices she answered (of course), Yes. She was very logical and kept on at a job until it was finished. Writing and being a writer were her passion, but she had little interest in her books, sometimes not even keeping copies, once they were published. There are numerous examples of her doing the logical thing not the socially appropriate thing.She had few friends but developed a dependence on the young psychologist John Money to the extent she had suicidal ideation when he cancelled appointments. When he invited others to meet her she quietly turned her back on them until they had left (a logical coping method for something happening out of context). She had a variety of acquaintances who acted almost as her social interpreters, such as Frank Sargeson. She was a keen letter writer but preferred to write with green ink at odd angles across the page. She was an early adopter of IT technology. She hated interviews for their unpredictability and because they required her to converse and interact which made her anxious, rather than write. When she had enough of these dreaded interviews she politely said goodbye and left even if the interviewer hadn’t finished. She had a strong social conscience, and empathy with the state of humanity, but was often naïve about the intentions of others.Trying to cope with the expectations of others was extremely stressful for her. As a new teacher she ran out of her classroom when the inspectors were due and never returned because of the anxiety it caused.

No one uses the written language in quite the same way as Janet does. Temple Grandin talks of various types of autistic abilities: the visual (artists and engineers), the aural (musicians), those with an affinity for numbers (the mathematicians) and those whose special ability is with words (such as writers).

In Janet’s writing there are frequent descriptions which make sense from an Aspie point of view, such as the title: An Envoy from Mirror City. Her children’s book Mona Minim and the Smell of the Sun – another Aspie title – is about an ant finding herself in the wrong place. It also contains endless word plays on the word ant.

Since my initial research in 2000 two more sources have become available. A 2004 documentary called Wrestling with the Angel contains interviews with many of her friends and acquaintances including the last interview with Michael King. Although autism is not mentioned many describe behaviours that are highly suggestive of it.In this documentary Michael King also gives the historical context. He believed eccentric geniuses like Janet did not have a place in conformist mid century New Zealand where ‘normality’ was very circumscribed. When the lobotomy was suggested to her she was reassured that someone who previously had one was now ‘happily selling hats in Dunedin’. This vision of normality was horrifying for Janet who just wanted to be left alone to be a writer.

An exciting resource is her recently published autobiographical novel Towards Another Summer. This was written in 1963 but never published in her lifetime possibly because of the childhood she describes would be regarded today as abusive. But it is the insights into her life and mind which are fascinating. Living in London and with the schizophrenia label revoked she writes, ‘I was a certified lunatic in New Zealand. Go back? I was advised to sell hats for my salvation’. But her character Grace still feels alienated and puzzled by the human world, ‘for so long she felt not-human, yet had been unable to move towards an alternative species…’.So she becomes a migratory bird. It also contains the most brilliant insight into anxiety as she prepares for a weekend visit to the family of a journalist interested in her work (note it is also one sentence – yet another example of her inventiveness).

‘Now journeys were not simple matters for Grace; nothing is simple if your mind is a fetch-and-carry wanderer from sliced perilous outer world to secret safer inner world; if when night comes your thought creeps out like a furred animal concealed in the dark, to find, seize, and kill its food and drag it back to the secret house in the secret world, only to discover that the secret world has disappeared or has so enlarged that it’s a public nightmare; if then strange beasts walk upside down like flies on the ceiling; crimson wings flap, the curtains fly; a sad man wearing a blue waistcoat with green buttons sits in the centre of the room, crying because he has swallowed the mirror and it hurts and he burps in flashes of glass and light; if crakes move and cry; the world is flipped, unrolled down the vast marble stair; a stained threadbare carpet; the hollow silver dancing shoes; hunting-horns…           

It’s no use saying Freud, Freud. People do, you know. Like squeezing a stale sponge.’ (p 13)

(Later she dismisses psychiatrists after meeting a young medical student ‘Harvey would make a good psychiatrist, although his face has not yet that certain expression which betrays the necessary constipation of feeling’) p. 31

Towards Another Summer reveals other common AS traits such as issues with linear time, coped with by being extremely early for appointments and public transport. She also refers to literal interpretation of words, for example being puzzled by the constant instruction in childhood to ‘pay’ attention.This is all very well but some like David Cohen in the Listener (10 November) have questioned the point of posthumous diagnosis. However, I agree with Sarah Abrahamson that there needs to be more understanding of autism by health professionals so people presenting with such traits are properly understood. Linking famous names to AS is one way to do this. It also helps to reframe the autism traits in positive terms when they are linked with famous people. They become special abilities not obsessions or abnormal interests. The special abilities of those on the spectum can be astounding and boundary pushing. We need to have a wider view of what constitutes creativity, humour, empathy, friendships. And accept this might go with a preference for one’s own company or different ways of ‘being’ in the world. And certainly broaden our view about what is ‘normal’.

Janet Frame clearly felt different from other people. She may have welcomed membership of the autism community, had she known about it. She may have: Michael King indicated her fascination with the autism of her grand-niece. There are rumours that she even had an official diagnosis.Whatever the real situation was, there is a powerful message in Janet Frame’s incredible life and writings about understanding, acceptance of diversity and inclusion.

Autism support as an election issue? Really? Oddly enough, that appears to be what’s happening in Australia.

On the same day that Labor leader Kevin Rudd used his campaign site (yes, there’s no election date, but you can bet there’s a campaign) to announce plans to introduce specialised child care and early intervention services for autistic children — focused initially on six new centres — the Howard government announced a massive funding package

Tellingly, as has been the case elsewhere, policy — on the government side at least — has been driven by personal experience:

The prime minister said the package was partly motivated by talks with Judy Fischer, the wife of former deputy prime minister Tim Fischer, whose teenage son is autistic.

Amid the bickering about who was cribbing from whom, Rudd made a sensible suggestion: whichever party won the election, both should unite on policy. I think the job for those of us who want to see greater attention to autism and education support here should be look for such a political consensus.

A similarly cross-party approach has underpinned the Make School Make Sense campaign run by Britain’s National Autism Society, which has gradually picked up the backing of MPs from both sides of the House.

Not that the Australian system is perfect: we do some things better here. And even the new proposals focus almost entirely on early education: Asperger teenagers and their parents, who face enormous challenges in the present system, might be wondering where they would fit in.

But in terms of getting our children’s rights on the political agenda, last week in Australia looks like a raging success.

PS: The Rudd camp followed up its announcement with a lively personal account from “Cassandra”,  the mother of an autistic child.